tag:blogger.com,1999:blog-4889592646404303255.post4919027605467779327..comments2023-10-08T07:50:35.783-04:00Comments on Fingolimod and Me: The Placebo EffectUnknownnoreply@blogger.comBlogger7125tag:blogger.com,1999:blog-4889592646404303255.post-75413524155480705212008-03-25T12:04:00.000-04:002008-03-25T12:04:00.000-04:00I totally agree, Suldog! The mind is a fascinating...I totally agree, Suldog! The mind is a fascinating thing and more powerful that we will ever know.<BR/><BR/>I just wish I could find a way to truly believe I no longer have MS. Maybe if I deny it to my very core and wish my immune system well, then I can actually be well.<BR/><BR/>The trick would be to picture Myelin as our friend. Put an image in my head of the My' Guy holding out a beer or offering up a picnic basket in a friendly, non-threatening way. Maybe the T-cells will catch on and buy into the imagery that I've created of the My' Guy being a friend, not foe....and quit eating him.<BR/><BR/>Okay, now I see everyone taking a step backwards and reaching for the doorknob...I really haven't gone crazy, I just wandered away from the sane room for a minute.<BR/><BR/>Anyhow, the expression "I wish you well" has taken on a whole new meaning for me.<BR/><BR/>I wish you well. :-)Jeri Burtchell (TickledPink)https://www.blogger.com/profile/05961503858715547705noreply@blogger.comtag:blogger.com,1999:blog-4889592646404303255.post-36309828793616753222008-03-25T11:30:00.000-04:002008-03-25T11:30:00.000-04:00The ability of the brain to ignore pain - or to pr...The ability of the brain to ignore pain - or to produce it's own pain-deadening substances - is fairly much unlimited, in my extremely humble and uninformed opinion. Just as something "all in your head" is quite real enough to the person suffering it, pain relief is equally real to the person able to think it.<BR/><BR/>The ability of people to think themselves drunk or high, even though they ingested nothing stronger than, say, grape juice, is well-documented.<BR/><BR/>Putting aside the truly miraculous, some "faith-healers" are able to get people to people walk through a combination of belief and adrenalin.<BR/><BR/>There is more - way more - to our minds than we presently know. Why not a way to cure, at least for some?Suldoghttps://www.blogger.com/profile/07778845367184916684noreply@blogger.comtag:blogger.com,1999:blog-4889592646404303255.post-4036867602285760372008-03-25T11:28:00.000-04:002008-03-25T11:28:00.000-04:00My mom was the 'mind over matter' type when I was ...My mom was the 'mind over matter' type when I was growing up. We weren't allowed to be sick. Simply not acceptable.<BR/><BR/>There was one morning where I REALLY did not feel well. Her responsive was the 'put it out of your head' and get in the shower. Well, I did as told and ended up throwing up in the shower. Then fainting in the kitchen. OK-finally, she conceded that I was sick and would be staying home.<BR/><BR/>Currently she deals with the effects of Lupus, Scleroderma, and related connective tissue disorders. She completely understands that it's not always 'mind over matter' but that attitude certainly makes a difference in the effect of dealing with disease, or wellness.<BR/><BR/>The mind is an amazing thing. The body is an amazing thing. And the connection between the two is mysterious.Lisa Emrichhttps://www.blogger.com/profile/10862232056342347990noreply@blogger.comtag:blogger.com,1999:blog-4889592646404303255.post-29727473147085325242008-03-25T11:20:00.000-04:002008-03-25T11:20:00.000-04:00Oooo!! Someone who thinks like me and dares to say...Oooo!! Someone who thinks like me and dares to say That Which Will Not Be Spoken around here.<BR/><BR/>The very worst times I have had with my MS seemed to get whipped into a higher state of "OMG This Sucks" simply from my reaction, which was to go into full out Panic Mode.<BR/><BR/>I'm sure I make it worse with my reaction...just don't know if I brought it on in the first place, but with all the Yin/Yang stuff in the universe it stands to reason that if we can think ourselves well, we probably can think ourselves sick, too.<BR/><BR/>I know if I mention I'm feeling "off", my mom will say "now, don't go <I>thinking</I> like that."Jeri Burtchell (TickledPink)https://www.blogger.com/profile/05961503858715547705noreply@blogger.comtag:blogger.com,1999:blog-4889592646404303255.post-33839496097530295532008-03-25T11:10:00.000-04:002008-03-25T11:10:00.000-04:00This is a GREAT post! And right up my...er...alle...This is a GREAT post! And right up my...er...alley! LOL<BR/><BR/>I could go on and on (and you must thank me that I'm NOT) about the mind, but I have a different question for you regarding the mind...what if in exploring illness/placebo effect we were to discover that not only can the power of suggestion to HEAL illness become a measurable effect...but what if the power to create illnesss existed in our minds as well??? That's really the back door to exploration regarding placebos...I'm just sayin'! LOL MAYBE WE ARE ONLY AS SICK AS WE THINK WE ARE...<BR/><BR/>Linda D. in SeattleBRAINCHEESEhttps://www.blogger.com/profile/04478852688645497036noreply@blogger.comtag:blogger.com,1999:blog-4889592646404303255.post-19732755545071810142008-03-25T10:38:00.000-04:002008-03-25T10:38:00.000-04:00Am I really an ideal candidate to be a clinical tr...Am I really an ideal candidate to be a clinical trial patient, though? I'm so very easily influenced that I'm wondering how much of my measurable success can be directly attributed to just thinking I'm doing well, and how much is the actual medicine.<BR/><BR/>In the case of the Neurontin that you experienced, you can definitely tell what's real and what's in your mind.<BR/><BR/>With my MS relapses, is it a case of "I could have just thought myself better and not risked this trial," or was I destined for this remission anyway, or did my change in lifestyle habits (quitting smoking and eating healthier) do it, or is this really the medicine at work?<BR/><BR/>I don't know how they will sort all of that out at the end of the trial, but it's all so fascinating to me.Jeri Burtchell (TickledPink)https://www.blogger.com/profile/05961503858715547705noreply@blogger.comtag:blogger.com,1999:blog-4889592646404303255.post-9544113620067720022008-03-25T10:29:00.000-04:002008-03-25T10:29:00.000-04:00The Placebo Effect is certainly an interesting top...The Placebo Effect is certainly an interesting topic. And the power of the mind is even more interesting. But when considering MS and it's truly unpredictable nature, it becomes more difficult to measure the effects of placebos (if that were even a responsible study.)<BR/><BR/>There was a time which I was running low on neurontin and began rationing it to myself while waiting for a mail-order shipment. First there was a gradual increase in pain, visible to others my an accompanied increase in irritability. Then the pain became intensely obvious as I prayed for that shipment.<BR/><BR/>This was not a controlled study, but good enough for me to know that neurontin does indeed limit my pain. It's just a matter of finding the threshold of effectiveness/side effects and staying right at that level. No placebo effect here - simply chemical reactions.<BR/><BR/>Now I personally thank you for participating in the Fingolimod trial. Your being a guinea pig will indeed help the rest of us, and hopefully it is helping you as well<BR/><BR/>Take care.Lisa Emrichhttps://www.blogger.com/profile/10862232056342347990noreply@blogger.com